Brain Fog, Uncertainty, Excitement, Beauty, and Hope

I’ve spend the last six months traveling in the land of brain fog. It’s a weird level of brain fog. I putter around the house as if I’m thinking just fine, then I sit down to write and my IQ plummets. Although my inability to string sentences together has kept me quiet, I’m actually doing remarkably well. My new treatment is working way better than I could have imagined and I’ve determined that the cognitive dysfunction is almost certainly a side effect from a drug I’ve been able to stop taking.

About My New Migraine Treatment

I’ve been using my new treatment since June 23. (I have to keep it a secret just a little longer. I’m told I’ll be able to tell you about it any day and am so excited that you’ll be the first to know when I can. Know that I’m not holding out on something that could help you now—It’s not yet available, but should be very soon.) The first months were full of heartbreaking lows and exhilarating highs, then my migraine symptoms seemed to settle into a slow and steady improvement. After quitting the ketogenic diet six weeks ago, my improvement became astonishingly swift. I can now eat anything I want. (I have to repeat that: I can now eat anything I want!). I still get a migraine attack every time I eat, but the symptoms are barely noticeable when the treatment works.

When the treatment works… that sounds ominous, but it’s really just part of the ongoing adjustment. Balancing the variables of which foods and how many calories I eat with calibrating the treatment just right is a challenge, especially because I keep trying new foods. When the dose is too low, the treatment dampens the migraine attack without fully aborting it. At too high of a dose, I feel great for an hour or two before a rebound migraine attack hits. However, When Goldilocks is satisfied, I’m high with feeling like myself again.

While these variations are tedious and make my day-to-day symptoms unpredictable, the overall effect is wonderful. You see, the treatment is making me less sensitive to food triggers over time. Once I find the right dose for a particular meal, the treatment works perfectly a handful of times. Then the dose becomes too high for that meal and I have rebound attacks. Then I have to guess at how much to reduce the dose and start the process over. (I’m talking in food triggers because that’s my issue, but the treatment can work for other types of triggers, too.)

On Brain Fog

Given the overall success with the new treatment, the persistent brain fog was frustrating. After dealing with it for months, other symptoms starting creeping up, like increased anxiety and ringing in my ears. When dizziness become another frequent companion, I had an epiphany: Wellbutrin has been the source of all the debilitating bouts of dizziness in my life. My new treatment is also used for depression… perhaps in addition to helping my migraine attacks, it was reducing my depression and making me overly sensitive to Wellbutrin’s side effects. I reduced my dose from 450 mg to 300 mg in January and the brain fog, dizziness, anxiety, and tinnitus reduced. Two weeks later, the symptoms began to resurface, so I reduced the dose again. And again. I’ve been completely off Wellbutrin for a week, the brain fog seems to be receding, and the other related symptoms have abated.

What’s Next? Uncertainty Reduction at the Grand Canyon

As I wrestled with my life’s current excitement and uncertainty combined with a loss of innocence brought on by politics and a family health situation, I imagined myself standing on the edge of a canyon. The phrase “precipice of grief” popped to mind immediately, but it’s message was was muddied by the image of a beautiful canyon. The meaning was unmistakable. Life is scary and full of grief. It is also unbelievably precious and beautiful. To root this belief in my heart and body, I’m going to stand on the glass bridge at the Grand Canyon. The thought terrifies me, but I expect seeing the beauty and confronting my fear will make me stronger than before. (At least I hope so, otherwise my metaphor will fall apart!)

After a busy few weeks of doing the Miles for Migraine race in Phoenix (please join me if you’re in town!), attending a conference at the Mayo Clinic and another for Health Union advocates (that’s the company behind Migraine.com), having my family visit, and recording for the migraine video series I mentioned last week, it’s time to think about the future. What matters most to me right now? Where will I be writing and how much? What roles will I play at TheraSpecs? How will I build my local community now that I’m able to be more active in the world? How else do I want to spend my time? I’m not sure what answers I’ll find, but I’ll let you in on the exploration.

14 Responses to Brain Fog, Uncertainty, Excitement, Beauty, and Hope

I am so happy for you Kerrie! Can’t wait to hear all about your new treatment.
We don’t know each other, but after a referral to the University of Washington’s Headach Clinic on a multi-disciplined approach, I am doing so much better and have not had a serious migraine in 5 weeks. My chronic daily migraine never approached the serverity of yours, but it was certainly negatively impacting my life and my overall health. Your thoughts on the uncertainty and excitement of your future resonate so much with me and I am just thrilled to be entering a positive phase of life along with you!

Hi, I found your site yesterday and have been binge-reading! Our migraine story is actually quite similar regarding frequency, triggers, etc. only I started my migraine journey just months before turning 40. I have now been dealing with chronic migraines for 18-1/2 years. I wondered if you ever revealed the new medication your are using through a trial. I am literally at the end of therapies to try. I hope your lack of posting here means your new treatment works so well that you are literally always busy and on the go….NOT that your absence reflects an increase in migraine frequency and intensity. Hope to hear your treatment reveal soon!

Hi Laura, I’m so glad you’ve found the site useful. I still haven’t named the treatment I’m using, but will very soon. And thanks for the kind words. I’m doing pretty well, though brain fog is keeping me from writing. I’m feeling well enough to do other things, so things are good on the whole… I do wish I could write!

I hope your new treatment works for you and maybe for some of us, someday. I really enjoy your site. I just found it today while trying to order new electrodes. It helps so much to talk to people who understand the frustrations and life changing pain that goes along with headaches.

Can’t wait to hear about your new treatment. I feel like my condition has many similarities to yours. I had suspected for some time that Wellbutrin was making dizziness and queasiness worse and stopped taking it after reading you had found the same (don’t worry did it with doc supervision). I feel less dizzy and a bit less queasy on the whole although my daily headache and intermittent migraines are still killing me. Again, can’t wait to hear about your treatment!

Hi Laura. I am writing to you from Saudi Arabia. I stumbled upon your website, and i delved myself quite well into it. It is amazing how we, migraineurs, despite all the tumult and strife, we keep resisting, and dig deeply anywhere to try to find the answers to our agonies, mainly because Migraine is still not well understood or full addressed by modern medicine, and because each case is so special. One thing in common, it is wreaking havoc among all of us. I am a man, and it is not so common to find one with chronic migraine. I found out a year ago that i fell , by ignorance, into the addiction grips of the opiate found in “Solpadeine”. As i stupidly pulled myself out of it lately while going cold turkey, i ran into serious withdrawal symptoms that for a migraineur were almost destructive. I can say that by now, i am over it. However, i noticed lately that i am being constantly sleepy especially after 2 to 3 hours of waking up in the morning, with some dizziness, which i know is a migraine prodrome. Luckily, i can nap in the afternoon, but feeling groggy, nauseated and fatigued afterwards. Headache would kick bad if i don’t nap. But, I was always keeping the headache pain at bay by napping, and on top of it taking Magnesium and curcumin ( excellent), and ginger for dizzy spells. It was a daily silent migraine mini-storm sweeping by. Lately, i could relate this my caffeine addiction (which was quite present in solpadeine as well), and by my stupid act of sometimes reducing then increasing its uptake at random. Adenosine and my unintended upregulation of its receptors in the brain caused my constant sleepiness and a migraine crisis to usher in on daily basis. Now i am gradually weaning myself off of it ( not cold-turkey as i learned harsh lesson from opiate), and sleepiness started waning as well as hopefully with the migraine. So you see, everyone of us has a trigger or a story to tell about migraine, and we may find our way out by accident with God’s will. Do you have anything in common regarding the sleepiness ( and yawning), with migraine and the relation to caffeine.